Today is the three year anniversary of the big dual-airbag upgrade (double lung transplant). Turns out, not all luxury models (or so I’d like to think) come stocked with standard functional disaster protection. Like many anniversaries, this one is somewhat bittersweet. I’m glad I am still alive… for today at least. I’ll keep you posted for tomorrow. A few weeks ago my outlook on survival was not so simple. It was mid-March, and as usual (post-transplant), I was weak and possibly dying. I was very sick. “Sick” sounds like such a weak and insignificant word sometimes. I was running another rapidly increasing fever. “We’re taking you to the hospital now, Adam,” my mother declared. A familiar and far too commonly heard mantra in our house these days. Chances were that my pneumonia had flared up again or that my body was once again trying to fight with these foreign produced upgrades.
“I’m not going back to the ICU. I’ve been there five times already this year!” I answered. I could see in my mother’s eyes that I was once again about to lose an argument regarding my health. My current body temperature was at 101.8 degrees fahrenheit. “Fine,” I said, “Look, if my fever hits 103 then, yes, of course we’ll go (to the hospital). Fair?”
I visited an old college friend/roommate yesterday in Lawndale, CA. I hadn’t seen her since she graduated. Her name is Heidi and she lives in San Jose, CA now. However, Heidi has been in Southern California for a coupe weeks because she just donated a kidney to her friend Neva and the operation was done at USC! I couldn’t believe it! What an amazing gift to give. I told her it’s the greatest present one can receive. “You have officially ruined Christmas for Neva forever,” I told her.
I couldn’t wait to visit Heidi and ask her what the experience was like for a donor. I know what receiving an organ is like but to give, wow! I received my two lungs from one cadaveric donor meaning he passed away. I was curious to know what it’s like to give away 1 of 2 kidneys while still alive and healthy. We talked for three hours atraight, hardly taking a breath! It was great to here about being on the “otherside” of the transplant process Read more
My girlfriend Mary has the best morning ritual I’ve ever seen. She gets up early in the morning so I often miss it, but I was lucky enough to sneak a peek this morning. Mary is a classically trained opera singer and has an appreciation for all music. What a lot of people don’t know is that she also loves to DANCE! Every morning she puts on her ear buds and dances away to the melodies from her ipod. It is sooo much fun to watch. When she’s in her dance mode she is “IN IT!” Nothing else exists in the world. It’s just Mary, her music, and a living room waiting to be ceremoniously boogied down every morning. I LOVE watching her be-bop her way around the house, eyes closed, not a care in the world, allowing herself to move and shake freely with reckless abandonment! Sometimes I think she loves dance even more than I do.
Nobody knows this about her and she’d kill me if she knew I told you so let’s just pretend she doesn’t read my blog entries and keep this between us. These are just some of the things I love about Mary. She loses socks on a daily basis, she loves terrible B-movies (if you don’t believe me, check out her favorite- Ice Pirates), she cooks amazing Argentinian food (meaning anything with beef, rice, and more beef), she loves internet spam (for real), and she has the brightest smile I’ve ever seen. Mary has an ability to brighten the mood of everyone she comes across. Being a masseus/esthetician is the perfect calling for her because she has a very warm and soothing presence. But enough of the gushy stuff. Let me tell you how we met. Fun story. Read more
Last night Mary and I watched “Half Nelson,” a movie starring Ryan Gosling who was nominated for an Oscar for his performance. It’s about a high school teacher that is crack head and how his life continues to unravel. Luckily a student helps him through it.
While watching the movie Mary said, “I’m sorry but when kids are involved, there’s no excuse for an addict to be high.” I told her that the disease of addiction doesn’t discriminate. She replied, “Oh come on, in front of kids? That’s fucked up.” Read more
So I thought I was going home on Wednesday… apparently the fates thought otherwise. Two days ago I was in the middle of signing my discharge papers from my recent hospital visit which involved GI (garstrointestinal) complications and a colonoscopy. Everything was looking good. The day before (Tuesday) I received my monthly dose of IVIG. IVIG stands for intravenous immunoglobulin. It’s basically a synthetic form of a blood transfusion. My hemoglobin is low but because of my transplant, monthly blood transfusions would be too big of a risk for my body due to my immuno-supressed system. So instead I would receive monthly IVIG which was supposed to be for the rest of my life.
We (doctors and I) knew that I was allergic to IVIG but it was so important that they would shoot me up with benadryl, anti-nausea meds, and steroids before running my infusion very slowly. Over the past few months it always ended the same way… begin IVIG infusion and 5 hours later I would have a screaming headache and vomiting. This didn’t occur at all on Monday so we were in the clear right? Wrong. Read more
Yesterday I had one of my regular nurses for the day. As soon as she walked in my room she yelled, “It’s our baby! Adam what are you doing over here (because they have me in a different wing this time)? How are you? We miss you! All the girls are going to be so jealous when I tell them I’ve got you today! I’m going to call them right now and say to them, “Guess who I’ve got today? Mr. Adams (that’s what they call me)!”” Now you may be thinking, man this guy really loves to talk about how much he’s adored but this wasn’t the way I was always greeted.
Yesterday, when they took me downstairs for my colonoscopy (yes it was quite pleasant, don’t be jealous), the nurse spoke to my mom for a bit. “Adams is our favorite,” she said. She went on, “Did you know that we used to pull straws years ago to see who “had to” be his nurse because he was such a pain in the butt to take care of? Nobody liked him because he was so high maintenance.” Read more
Sitting in a hospital bed right now. My colitis (swollen colon) is flaring back up causing a lot of pain, fevers, vomiting, and other pretty graphic details that won’t share with you at this time. Just had a colonoscopy yesterday, or what I like to call a Saturday Night! Hey-oh!! Got the old roto-rooter treatment!
Anyways, I just met an LVN nurse named Gideon. Really fascinating guy. What a life he has lived already! He was born in Ghana and moved to the states at age 19. Before that he was in the army. He said he saw things that he could never repeat and realized after a year that he couldn’t take it anymore. He told me all about Ghana and how corrupt the cops and government are there. He said he got it in his head as a teenager that he was going to live in the U.S. some day, so he started saving money and went for it at age 19. “It wasn’t easy,” he said. “Everybody wants to live here. There are people that would literally give up everything they have to live in the states.” Really puts things into perspective. I told him how inspiring I thought he was. Not a lot of people have the stones to pursue what could be considered to be a “pipe dream” at best. But here’s this scared young kid who decides to better his life and actually does it! Pretty cool. Read more
I was asked recently to speak in Riverside, CA for a session of TED Talks or technically “TEDx (since it was independently funded and produced).” This was an amazing experience. I received a call about 3 months ago from my friend Rebeccah Goldware (who was the one that apparently nominated me), telling me that I was chosen to be a speaker for TEDx Riverside. I was so excited! I asked if I needed to speak on a specific subject and they said to just tell my story. It was interesting to see how the whole TED Talks process worked. There were several rehearsals, the first one being a month prior to the event, as well as coaches and due dates for drafts of your speech. I was assigned two coaches, Russell and Yo Yo. Yo Yo was… the silent type. She sat in on the first skype session to review my speech and I think she said two words the entire time. Technically one word… twice. “Yes,” when asked if she felt the speech was light enough at the end, and another “Yes,” when asked if she agreed when we were finished with the skype session. A woman of few words but very kind and sweet. Read more
Last Thursday I had a medical procedure called a broncoscopy to look for rejection in my lungs. Basically they stick a huge scope down your throat to biopsy the lungs. Before this “simple procedure” (that’s what the doctors always call it), I had a pre-op nurse named Tracie. I think we were meant to meet each other that day. Within minutes we began talking about life, love (or lack thereof), and loss. We were talking about relationships and I told her about my awesome girlfriend and how we met while I was still on oxygen.
She said,”Now see, that’s what I want in my life!” I asked her if she ever takes time to be single and she said, “No I think I need to do that.” Read more
So Mary and I just saw “The Fault in Our Stars,” and yes, I will probably be posting about this movie for a while. It’s a movie about teenagers that fall in love while dying of cancer. The main character, Hazel, uses an oxygen tank to help her breathe. When I originally saw the preview for this movie I thought, “That’s my life!” Mary and I were desperate to see it, being that we fell in love while I was on oxygen.
There’s a scene where she and her love interest are discussing their relationship and she tries to ward him off beccause she was dating a “grenade.” We could relate. For the first few months of our relationship I kept subconsciously trying to scare off Mary because I was afraid I was going to die soon and be a huge burden. I would remind her that there was a very strong chance that she would have to watch me slowly die within the next decade. Read more
One year ago today I received the greatest gift I have ever received. I was given two new lungs that have kept me off of the oxygen tank for a year now after seven long years on continuous oxygen. It is sort of bittersweet. It hasn’t been the easiest year. It’s been one chaotic medical disaster after another. From staph infections, to multiple pneumonias, rejection, overdoses, kidney failures, bowel obstructions, appendisitis, death etc. I have spent more days in the hospital than I have out over the past year. Life has been a struggle over the past 9 months. I reached my fill after the doctors almost killed me (again) by overdosing me (again) on antibiotics. Read more
I just had my last surgery (hopefully) at UCLA today. I was there to get the wires from my transplant removed from my chest. Apparently they tie your chest back together with thick wires once they’ve finished transplanting the lungs. For skinny people the wires start to poke out after a few months as the swelling goes down. I’m only the second person in my clinic that’s needed this surgery. Here’s a picture of the wires- Read more
I went to see Moneyball today starring Jonah Hill and Brad Pitt. Fantastic film! There was a scene near the end of the movie that later got me thinking. Brad Pitt’s character is at a crossroads and he’s not sure if he should take a better offer as general manager from a different team or stay with his current franchise. He walks onto the middle of the empty baseball field in Oakland and lays down on the pitcher’s mound amongst the dirt, grass, and empty stands, just praying for clarity while he listens to the stadium’s silence. I can relate to that. Read more
I’m really getting tired of being “that guy.” The sickly one. I (unrealistically) believed that my image as the “Oh there’s Adam, he’s so sick but he’s so brave,” guy would go away after my transplant. Lately every person I run into does the exact same thing. They ask, “How are you feeling?”
Now I know what you’re thinking, “Is this guy seriously complaining about the fact that people care about him and are concerned about his well-being?” The answer is yes. It’s not just what they ask but how they ask it. Before this dreaded four-worded question is uttered by others, they tilt their heads to the side and ask in a quiet voice with just a hint of melancholy, “How are you feeling?” Read more
The port-a-cath is no more! The procedure went very well! It took one numbing shot of lidocaine, a couple little incisions, a few stitches, and voila… no more bionic man! Since I have new healthy lungs I won’t be needing IV medications around the clock anymore so 8 years and 3 years port-a-caths later, my chest is tube-free once again! And I couldn’t believe how painless the procedure was. The doctor (Dr. Wilson) started out by saying it was a “simple procedure.” I told her I had a “simple procedure” last week which ended up being quite a painful spinal tap so please don’t use those words.
She responded by saying, “Well to be honest I’ve had a spinal tap too and those hurt. I’ve never had a port removed so to be honest I couldn’t tell you it it hurts more or less but from my experience this should be a lot less intense.” Read more
It was a normal Thursday on May 30, 2013 at 5:30 pm. I was in my car on my way to a 12-step meeting when my phone rang. I noticed that I was receiving a call from the 310 area code but thought nothing of it. For the past two years my heart had skipped a beat every time my phone rang from the 310 (Los Angeles) area. By this time thought I had already come to a level of acceptance that I was never going to get “the call” for my transplant and that in all reality, I was going to die. I wouldn’t say I was ok with this fact but I had reached a level of peace with it.
I answer the phone thinking it’s probably just another message about a blood test or question about my change of address. “Hello,” I answered. Surprisingly, a British voice I didn’t recognize responded. Read more
I am 4 months post-transplant and unfortunately am in a bit of rejection. It is really kicking my ass. The doctors have thrown all of my medications for a loop and my body has no idea what’s going on. I spent about 7 days in the hospital throwing up. After a couple of procedures (including a spinal tap and bronchoscopy) the doctors decided that I needed to go on heavy steroids and antibiotics. Oh and don’t worry, we turned that spinal tap up to eleven!! Read more
Well I have not contributed to this blog in almost a year now and for that I apologize. Much has happened both good and bad. I have been on the transplant list for 15 months now and found out a few weeks ago that I am currently #2 on the list!! They told me that Christmas is the busy season (morbid thought I know) and not to be surprised if they call me before the new year!! Crazy!!!
Last week I received a shocking phone call from my mother. The phone rang on Wednesday morning and I could hear in her voice that something was wrong. “Your father left me last night.” I didn’t know how to respond to this news. They have been married for over 40 years. “He said he doesn’t want to be married anymore.” I don’t really know what is going on in my dad’s head which is hard because I want to be loving and understanding, but he’s making that incredibly difficult. He has yet to talk to me or my brother despite our attempts to get in contact with him. I had my first panic attack 2 days later and ended up in the hospital. It’s funny, I’m 31 years old and yet I feel like a 6 year old watching mommy and daddy split up. I guess it doesn’t matter what age you are when things like this happen. It’s always hard. I saw him for a moment when he came to check on me but that is the only communication we’ve had so far. The family is still trying to digest all of this but needless to say it will be a tough Christmas.
However, I must end with some uplifting news… I’ve met a girl. Her name is Mary. We have only been on a couple dates but she seems pretty damn awesome so far and we are definitely smitten. Stay tuned…
Yesterday I received an invitation to the 50th wedding anniversary of a couple (Fred and Gerry Finn) that owns the first studio I started dancing at at the age of 6. The odd thing is that after many attempts, they never reciprocated any contact or communication with me after I left their studio (over 15 years ago). I left because I needed to move on and find other schools that could offer training to help take my skills as a dancer to the next level. I guess sometimes you just have to wait for time to work its magic and allow the dust to settle. Pretty cool really. I am looking forward to attending and seeing a lot of my old friends from waaaaaay back! That however is not what I meant to blog about. Read more
I am currently on Step 9 of this 12-step program which states:
“We made direct amends to such people (we had harmed) wherever possible, except when to do so would injure them or others.”
Today I made amends to my ex-wife Hallie. I wanted to do Hallie’s amends first because it wass the one I was most nervous about so I wanted to get it over with and done ASAP. Due to the intimate subject matter of our conversation my sponsor recommended we meet in private instead of at a coffee shop or some other public place. She met me at my house this afternoon. I was quite nervous about the whole thing. I wasn’t sure how it was going to go. I hadn’t seen Hallie in over 7 months and even then it was only to sign divorce papers. I was nervous as hell. Read more
I have had a great 24 hours! Yesterday I taught my first ballet class in over 5 years! I forgot how very much I missed it. An old student of mine named Victoria opened her own studio a few years ago and asked me a couple months ago if I would be willing to guest teach a master class for her students. She was already aware of my physical limitations so luckily I didn’t have to explain the whole oxygen tank thing which was a relief. That can be rather awkward sometimes. I told her that I would love to teach but that I wanted to her to be aware that I may have to cancel or postpone at the last minute due to possible unexpected health complications. I’m glad I prefaced our agreement with this because low and behold, the day before I was scheduled to teach, my doctors put me on IV meds for a lung infection. With less than 24 hours before the class I had to push it back two weeks. Luckily Victoria was very understanding and flexible with my situation. Two weeks passed and tada! We had a great time! Read more
18 months clean today! 18 months ago I was lost, depressed, defeated, alone and broken. Today I have a laundry list of (good) friends. And among that list are a handful of people that truly care about me and want the best for me. They would do anything for me as I would for them. And once again I have a wonderful and healthy relationship with my family. Things have never been better between my brother and I. I love living with him. He’s the best roommate I’ve ever had… twice! We were roommates in college first. Read more
I do my best not to blog about daily nonsense but being the devout obsessed movie-freak that I am, I must talk about films for a second. The 2012 Academy Awards nominations came out a week ago and I was very disappointed. I am a huge fan of the indie (independent film) scene myself and it looks like Hollywood is aiming to award more big-budget movies this year to pander to a larger demographic and attract more viewers come Oscar night. I understand money must be made but there are three categories that really shocked me this year, overlooking some very obvious and much more deserving talent. Read more
Vulnerability is a funny thing. I never thought I had a problem with exposing my true self to the ones I love but I was seriously kidding myself. I thought it wasn’t a problem because I had never allowed anyone including my wife to see how truly scared and lost I sometimes feel.
In 2006 Hallie (my ex-wife) and I were living in a nice apartment in the Riverside Sycamore Highlands area near Moreno Valley. I was teaching at three different studios and dancing with a local ballet company, while she was working in the office for my parents and attending community college classes full-time to become an elementary school teacher. Read more
I have been feeling lonelier than usual lately. It’s true I have not had sex in over a year now (kill me please) and could use me some touch, but more than that I miss that emotional connection with a woman that is so rare in life. I have been competely vulnerable with someone I love (my ex-wife) in the past and therefore know exactly what my life is lacking.
It feels like dating isn’t even a realistic possibility right now. A year ago I was ok with the “no-relationships embargo” because I was getting clean and really just needed to focus on fixing me. But I feel that now I’m in a situation where I could handle a sexual/romantic relationship without being a mental and emotional wreck. Unfortunately, chicks don’t usually list “young dying dudes on oxygen” as a major turn-on in their personal ads. Let’s be honest, the dating game is hard enough when we’re healthy, so carrying around an oxygen tank 24/7 makes it practically impossible. Read more
It has been a rough weekend. Yesterday I went to Del Taco with a fellow newcomer who was going through what tourned out to be a love triangle. Apparently she was hooking up with a guy who was also hooking up with another chick (we’ll call her Julie). Julie found out about the affair and she and my friend were going at it. I reminded my friend that they were all newcomers so tensions are naturally high and that she needs to hate the man playing the field instead of the woman who is one of his many “customers.” One of the biggest lessons a new person in recovery has to learn is how to have relationships with the opposite sex without always sleeping with them. It’s not something you pick up overnight. Read more
Well about a month ago I was developing a raspy cough and running fevers so I went to the doc and got put on a 20-day regimen of oral antibiotics (Cipro and Doxicycline). The meds seemed to be doing the trick and I finished the prescriptions about a week ago. The past couple days I’ve started to run fevers again, which is always the first indicator from my body that there is an infection harboring in my body. Last night got pretty bad. I was up most of the night with fevers and then was coughing up blood for over two hours. It sounds dramatic but hemoptysis (the expectorant of coughing up blood) due to bleeding of the lungs is quite common for CFers and as long as it is monitored and reported to the doctor is not usually an urgent emergency. Unfortunately though, this means I will most likely be going on iv antibiotics and possibly getting a “tune-up” in the hospital. I hate being in the hospital because I have to stay all the way in L.A. because that’s where my CF clinic and doctor are and it can get pretty lonely. I can’t complain though because it has probably been almost 6 months since I’ve had to be admitted and have stayed rather healthy through the Fall and Winter. Read more
Spencer, a friend and fellow cystic fiBRO passed away a few hours ago. He was 22 years old and was a champion to those of us living with this disease. He died with his wife and loving family by his side. It was amazing to see the amount of love and support they have received from the CF community over the past few months. Spencer went into the hospital in September for a collapsed lung and his health continued to worsen as the weeks progressed. Even though I never got to meet him in person, Spencer was known by many for his relentless optimism and endless fight against an ugly disease. He was a real hero who will be forever remembered. Read more
I have a friend named Spencer who has Cystic Fibrosis. Spencer is 22 years old and nearing the end of his life. He was on the lung transplant list but now he’s too sick to be a candidate. The doctors have said that there is nothing else they can do for him so now he is trying to hold on until Christmas so he and his wife Nikki can have one more holiday together. But sadly it looks like he may not make it through the week. He is in a lot of pain and is barely sleeping. I kind of hope he lets go sooner so he no longer has to suffer. The most fucked up part of this story is that when Spencer was capable of receiving new lungs, the hospital wouldn’t move forward with transplant without a $20,000 deposit. By the time they raised the money it was too late. And people still think we don’t need socialized health care?
Those of us in the online CF community are pretty shaken. Spencer has always been a champion for CF awareness and is only 22 years old. He has an infectious smile and his wife is a real sweetheart too. I admire her a lot for her willingness to take on what I can only imagine to be a living hell. Not only does she have to watch him suffer, she has to watch him die. Sadly she has yet to face the worst. The storm is still to come but I continue to be inspired and amazed by her courage in choosing to face the wind head-on. Luckily she and Spencer have a lot of love and support from people that care about them very much. I forget how largely connected the CF network is until something like this happens.
For some reason, the weight of this tragedy did not sink in until tonight. I found myself crying after the meeting when I was in the car heading to my parents’ office. I cannot deny that much of this sorrow is lead by fear. Fear of when I will be suffering the same fate. I have been talking with my good friend Danielle who also has CF and is a post lung transplant thriver and survivor. We were discussing how we have now reached the median age of expected lifespan for those with Cystic Fibrosis. It’s scary to think that this is going to start happening on a regular basis. I realize that the average used to be much lower, but no matter how much we are educated about our early mortality, we are never prepared for it when it starts.
I feel scared, lost, angry, sad and frustrated tonight. I know the feeling will pass, but it hurts right now.
Here is a picture of Spencer and Danielle together.
The other day in the car, my brother (Chad) and I were listening to a song entitled “Violin” by my favorite artist, Amos Lee and we got into a discussion about God and what that means to different people. Read the lyrics of this song first and please understand that the use of the word “God” is not a religious reference but rather a spiritual one. Read more
Busy day today. Went to a dance concert (Kinetic Conversations) at Riverside Community College which was wonderful and then to a wedding reception for Larry and Rebeccah. Rebeccah has been a close friend to our family since the beginning of high school. The first half of the day was a real treat getting to watch some of my students from the past perform. It was strange because after the show I was struck with a little remembrance of the past.
I have been involved in the dance world since I was 6 and once I got into high school people in the southern california dance scene started to know my name. Some people would recognize me off the street and approach me. I used to even sign autographs from time to time. Today I had three different (beautiful) women come up to me to tell me that they loved watching me dance and that I was their “hero,” to quote on of them. This was an amazing ego boost for me and during the drive home I began playing it back in my head and suddenly noticed that the size of my head was expanding rapidly. I became instantly hesitant to enjoy the ride any longer since my pride has often gotten me into trouble in the past. I remember my sponsor recently telling me that when we find ourselves acting on a personal defect we should try to counter it with a spiritual principle. I asked myself, “What is the opposite of pride? Humility. Ok, how to I practice humility?” I am still working on that. I meditated on where I was at that very moment and what I wished to accomplish simply for today. Little did I know that since I am still learning to practice humility on my own, the universe was going to help me out only a few hours later. Read more
I was at a great meeting in Long Beach tonight with Dani, my awesome friend in recovery! On the way home we started talking about our pasts. Naturally, dance came up in mine and I told her how I believe performance quality helps determine the difference between a dancer and an artist.
Just like many forms of art, dance can require a very self-involved lifestyle. Ballet is practically self-obsessive. The entire class is spent in front of a mirror trying to manipulate one’s body to make it look as good as possible. Being focused on oneself is the only way to successfully execute proper technique, but a ballet company doesn’t hire a dancer for his/her ability to rehearse. It’s the performance quality that a ballet company pays the dancer for. A professional baseball player can hit unending homeruns during batting practice but come game time, if he can’t deliver at the plate, he quickly becomes unemployed. When I’m taking class and rehearsing in the studio, it’s all about me. I’m constantly trying to figure out, how I can kick higher, leap farther, spin longer, and basically make myself look better aesthetically. But once I step on stage, my primary concern can no longer be about me, but rather the audience. Read more
I write this as I play with my new lime green Donate Life bracelet I received when I attended an informative transplant awareness seminar a couple weeks ago. It was put on by Sue Miles, the (ass-kicking) heart and lung transplant coordinator at Kaiser who is sadly leaving us soon for a promotion higher up in the Kaiser system. That’s how good she is.
I was easily the youngest person in the conference room by at least 2-3 decades. I was the only CFer and was amongst a room of post and pre-transplant patients. All of the pre-transplant patients (myself included) were toting around oxygen tanks for assisted breathing. We had to be one of the most flammable support groups on the planet. I’m surprised we didn’t have large warning signs outside in the hallway for passer-byers reading: Caution! Highly combustible non-breathers behind door!! Even though I was happy to be around fellow transplant hopefuls I felt a bit out of place being that everyone in there was a good 20-30 years my senior. Read more
The discussion of God or a Higher Power (12-step term) as I like to refer to it is always a tricky one. I don’t believe in God in the traditional sense, as a (male) being with a long white beard in the clouds that manipulates the world like a puppet on a string to fancy his own childish whimsy. Luckily we don’t have to call ourselves atheists just because we don’t believe in this simplified, two-dimensional cut and paste version of God. This traditional dogmatic ideal of God cheapens and dulls what is actually a fascinating, complex and ever changing understanding of a power greather than ourselves. Read more
I went to see the movie 50/50 at the theater for the second time this month. For those that are not familiar with this movie, it’s about a young healthy man (named Adam) who finds out that he has cancer and has a 50% chance of living. I will probably see this movie at least one more time before it leaves the theaters. I can identify with a lot of the antagonist’s daily struggles and challenges both physically and mentally. There are a few scenes that make me say, “That’s my life!” Read more
I had some Jehovah’s Witness church members come to my door yesterday. I always enjoy chatting with them. We disccuss God and Jesus, I challenge their whole belief system, and they tell me that I am living a life of the “wicked,” but in a very kind and polite way of course. We spoke for about half an hour and it was nice and somewhat entertaining to hear their perspective. Plus when you are unemployed and on disability, you gotta take advantage of life’s little opportunities sometimes.
The verse they read to me was about living through Christ to avoid following the ways of the wicked (I’m paraphrasing of course). My first request was, “Define wicked.” One of the men, Mel told me that the wicked are those that do the wrong thing everytime, even when they know it’s wrong. I asked him, “Do you really think those kind of people exist?” Read more
I have been voraciously trudging through my step work lately. I completed step 5, 6, and 7 with my sponsor in 4 weeks. I stalled for months (8 actually) without doing a single step but and am really inspired to get through all 12 again. I asked myself, “Why the sudden change in motivation?”
One of the reasons is because I want to finish my 12 steps so that I can hopefully start sponsoring newcomers sometime in the near future. My sponsor said that he thinks I’d be ready now if the opportunity presents itself. I guess we’ll find out. But there’s another reason I’ve been rushing through my steps as well. I can’t help but hear my friend Kelly’s words play as a neverending echoing loop in my ear. “My wife died (of CF) waiting for a double-lung transplant at UCLA. Her lung capacity was at 24 %.” Read more
The transplant support group I went to today was pretty cool. I spoke for a long time with a very kind 57 year old with Pulmonary Fibrosis name Greg. He was just recently diagnosed and is still trying to get a grasp on the changes that have ocurred in his life over the past 3 months. When I arrived at the meeting, there were plenty of people at the door to greet me and welcome me. They said, “Welcome, help yourself to some food.” If there’s one thing in this world a CFer won’t turn down, it’s food. I am known amongst most for my ability to put it away when it’s eatin’ time!. An NA newcomer asked me the other day, “Adam, why is it that everytime I see you, you’re eating?” I responded with a grin, “Yep. Pretty much.” Read more
I have been thinking about death a lot lately and am a little more scared each day. I can’t help but notice that I’m sleeping more and more and can barely walk from my car (that’s parked in a handicap spot) to the meetings without getting extremely winded. I’ve had to turn up my oxygen because 2 liters/hour wasn’t cutting it anymore. The upside to that is that it looks like I’m going to get moved up a little higher on the transplant list. The downside is that that means I am getting closer and closer to early mortality. I think about my life and I get so angry. I carry a huge resentment with God even though I try not to pity myself and appreciate what I have. I can’t even leave the house with out carrying 2 duffle bags for meds and oxygen and 2 tanks in my hand. I want to jog. I want to swim. I want to take a nice long shower. I want to go to the mountains. I want to chase women. I want to travel. I don’t want to be dying anymore. I feel like giving up sometimes. I want to say to God, “If I’m gonna die, just kill me already, otherwise… LET ME FUCKING LIVE!!” Read more
I am outside of my recovery area for the first time this week. We are visiting the family in Washington so we’re staying in an Embassy Suites in Portland, OR. I have been attending a meeting in downtown Portland at noon for the past couple days. Yesterday’s meeting was pretty good but the meeting today was awesome! I met a few people this week and today’s meeting was a tag topic meeting. Tag meetings are when the person that shares picks the next person to share when he/she has finished. The topic for today was insanity. For some reason something in one of the sharings sparked a memory in my mind. I began contemplating the insanity and unmanagability in my life during active addiction. A few moments later one man named John finished his share and said, “I thinik I wanna hear a new story today. Adam would you share next?” Read more
I was 18 years old and I was nervous as hell. I had been chosen as one of two finalists for the 1999 Music Center Spotlight Awards. The Spotlight Awards are an annual schoarship competition that select two California high schoolers to dance, sing or play an instrument in either the voice, dance or music category. There is also a classical and non-classical category for each art form (music, dance, and voice), so the dance category had two ballet finalists and two modern dance finalists. I was one of the finalists for the modern dance category.
Once selected, each student gets to perform to a packed house at the Dorothy Chandler Pavilion in Los Angeles. It’s actually kind of a big deal to be a finalist. It’s a televised show (not live), hosted by John Lithgow and the performers are judged by some pretty big names in their industry. My judges were from the American Ballet Theatre, Joffrey Ballet and Jose Limon Dance Company. It is also an incredible opportunity to perform for friends, family and fans of the arts. My parents had 80 people from Riverside alone coming to see me dance. They rented a charter bus to make the drive up to Los Angeles together. My entire dance studio was coming too because the other modern dance finalist, Melanie was a fellow dance partner from the same studio whom I danced and rehearsed with on a daily basis.We even had the same choreographer for our solos. This was an amazing experience for me and I was very fortunate to live it but as you can imagine on the days leading up to the event pressure began to pile on. The pressure was always of course a self-manifested delusion but I couldn’t see that. I was always harder on myself than anyone else, which at times led to extreme stress and occasional disappointment, always thinking I could have done better. Unfortunately being obsessively competitive can create an unbearable amount of anxiety. Read more
We talked about the first step in our book study meeting this evening. Surrender and acceptance is always a common theme when discussing Step 1. My journey to acceptance that I was an addict was slow to say the least. I think I was always afraid to find out what others would think of me so I used in secret. I eventually came to discover that all of those close to me had known about my addiction for quite some time. Oddly enough, the last person to realize or accept that I was an addict was myself. Denial is a warm comfort to one in active addiction. Read more
A friend of mine approached me at a meeting today about my CF. She asked me my age and I told her I was thirty. “Did you know that I looked it up on the internet and it says a lot people that have what you have, have died by now,” she asked with a smile. I don’t think she meant to be so blunt and direct, English isn’t her first language so sometimes her words sound harsher than intended.
I kind of chuckled and said, “Yeah I know.” Read more
Having a restrictive illness is kind of like being in a car with limited gas for a 100 mile road trip. You start finding any and every way to conserve energy. If you park at a 7 Eleven because your buddy wants to run in for a slurpy, you’re gonna turn the engine off so the engine won’t eat up the gas while idling. The human body is very similar.
When you know your body has limited mileage on a daily basis you start learning little tricks to conserve as much energy as possible. Showering has become a a competitive 100 meter dash for me. I used to be one of those people that stays in the shower for 30 minutes until the hot water runs out. Much different story today. Luckily by the time I get my transplant I will have mastered a bathing technique that is both timely and efficient. It’s bound to come in handy from time to time, I’m sure. Read more
I attended the NA world convention this weekend in San Diego. It was awesome! Over 16,000 recovering addicts in the same room together to celebrate a clean lifestyle and carry a message of hope for the newcomer! My favorite speaker spoke at the Friday night main meeting. His name was Mark and he was from New Zealand. He wasn’t one of these “circuit speakers (someone that travels around the world speaking at NA events)” that yells, dances and cries (artificially) throughout his sermon, oops I mean share. Mark was very calm, quiet, and genuine. He spoke the truth and he spoke it from the heart. He had the same appeal to me as my sponsor did at first glance. He looked serene and content. He had something that I hope to get someday as well, whatever that “something” may be. Read more
5 days until my first NA birthday! In L.A. right now awaiting a very important phone call. I should find out sometime in the next 24 hours if I am officially on the transplant list! Had my last appointments with the transplant team this morning. I met with the surgeon at 7:30 am. Had a psych eval with the psychiatrist at 10:30 and an appointment with the social worker at 11:45. Big day. Quite exhausted. We came back to the Holiday Inn and passed out. Got a good 3-4 hour nap and then we went for Indian food down the street. Then took a hotel tour near UCLA to check out the best cheap hotel for my family to stay in during the 2 week transplant post-op hospital care process. All in all it has been a very full and productive day. Ready for sleepy time… Read more
I consider my current condition to be a dance hiatus. I don’t tell people “I used to be a dancer” anymore because it’s not true. True I am not able to dance for the time being but I am still a dancer. In a rehab group one night there was a woman crying because she lost her job as a school teacher due to alcohol abuse, an unfortunate consequence that many addicts are confronted with. “I hate that I’m not a teacher anymore,” she said. I could see how lost she felt at that moment so I raised my hand (because this was a group with cross-talk) and said, “Just because you can’t teach children today doesn’t mean you’re not a teacher. A teacher is who you are and who you will always be. Nobody can take that away from you.” I feel the same way about being a dancer. Every aspect of dance has in some way shaped my life and made me who I am today. I do not suddenly cease to be that person simply because I am currently incapacitated from my dancing abilities. However I do require the occasional reminder from my body that I am NOT in any condition to be dancing at this time. I tend to forget about my body’s limitations from time to time. For example… Read more
I received a somewhat upsetting phone call last week. The day before my transplant evaluation I received a call from the transplant coordinator, Sue Miles. She told me that my evaluation was being brought down to the status of a discussion. Apparently my white blood cell count and my blood platelet count have elevated dramatically meaning there is an infection harboring in my lungs that needs to be eradicated. I was disappointed because I have been working so hard over the past 10 months to stay calm, clean, and compliant with all of the pre-transplant testing and procedures but I’m starting to get tired. Read more
I’m enjoying another lovely stay here at Hotel Kaiser. Everything is business as usual. I asked for an ocean view room but got a view of the parking structure instead. It’s one hell of a parking structure though! I have a MRSA infection in my lungs and my white blood cell count is high (even for a sick person) and my blood platelets are also elevated so I’m in for a tune-up! Hoping it will only be for a week. It’s ok though, I keep myself entertained. I enjoy messing with the hospital staff from time to time. Yesterday I asked the radiologist, “Did that cat-scan make me look fat?” He thought I was a crazy person. He’s not wrong. Read more
Addiction manifests itself in many ways, shapes and sizes. It’s not always about, alcohol, booze, dope, sex or any other controlled intoxicating substances. Surprisingly enough, my first family intervention had nothing to do with drugs. I have always been obsessive over little things that interest me. If I fall in love with a certain dish, restaurant, or type of food, I must have it every day. I had a fixation on caramel corn from a Candy Emporium at the mall when I was about 12. I would eat a huge bag until it was gone and try to get a new bag ASAP. I’d save up my money to buy a new bag before my current one ran out. My dad eventually had to take it from me and tell me to cool it on the popcorn consumption. When I find a musical artist I enjoy, I tend to immediately buy every song he/she has ever written and check out concert dates on ticketmaster. I have always been this way. The first obsession that became extremely unhealthy and created an unmanageable lifestyle was the same one that had kept me alive and healthy for so long.
Luckily throughout my youth I had the opportunity to see Mikhail Baryshnikov perform on stage more than once.Knowing that Baryshnikov was my biggest hero, my parents tried to book tickets for us to see him whenever he was performing locally. Misha was nearing the end of his career as a performer and was doing mostly contemporary works by the time I saw him perform. I was able to see the modern company he founded, the White Oak Dance Project perform in their very first tour. Seeing a lot of contemporary work at a young age exposed me to the artisitic side of dance and choreography early in my life. That’s probably one of the reasons why I prefer the modern and contemporary genre of dance so much more today as opposed to classical.
In 1998 at the age of 50, Misha performed an entire night of solo performances. He closed the show with a piece entitled, “Heartbeat.” It began in complete silence with an empty stage except for a large stereo system standing in the middle. Baryshnikov walked on stage and reached for the volume dial on the large receiver. A thump began to echo throughout the theater. A constant pulse radiating from the speakers. This pulse was Baryshnikov’s heartbeat. The beating of his heart which remained the only accompaniment to his movement throughout the entire work. As his movement intensified, so did the beating of his heart. Once in a while he would stop, stand still and then bend over letting his head and arms hang until his pulse slowed. Once the endless thump would ritard, he would begin dancing again. Read more
Despite my medical condtion I was always a very energetic and highly active child. Perhaps crazy or manic would be a better way of describing my inability to harness or control my neverending amounts of energy when I was little. My doctors have said more than once, “Adam, if you didn’t have CF slowing you down, you would have definitely been hyperactive from birth.” Like all children I was constantly seeking new outlets to satisfy my endless need to move, run, jump, dance, play and be free. So my brother and I (like most kids) sampled many sports including soccer, baseball, swimming, karate etc… I loved t-ball and my dad’s dream of having a son in the MLB looked extremely promising to him I’m sure.
My parents noticed I was always dancing around the house and began to believe my natural sense of balance was possibly better than average. My childhood nanny “Dodo (Doris actually, but that’s what we called her) would always say, “When you hold him, you don’t have to do anything. He naturally latches on to you and balances his weight on your hip by himself.” It was becoming evident that I had an above par sense of balance, especially the day I learned to ride a bike. Once the training wheels were officially removed at age five I remember my mom and dad warning me, “You will probably fall down the first few times you try this so don’t get scared or disappointed when you do.” They ceremoniously pushed me off for my first solo ride and I rode and rode on that bike until I reached the end of the street. I never fell down that day. After that? Well… I would later learn that I am extremely clumsy since I suffer from the dancer curse of not knowing where myself or others are in my environment when active in everyday life. I think it stems from our belief that the entire world’s axis spins around us and should we move in any way, the universe should simply adjust itself accordingly. In a nutshell, I eventually did clumsily fall down on my bike… a lot. Just not on the momentous first day of big boy biking. In fact I later got struck by a pick-up truck in North Carolina while riding my bike at age 19. Broke a rib and everything. But that’s a different tale for a different day. Back to my story. Read more
What is it they always say, “It all starts with a kiss?” I guess that is sort of true in my case. I had many medical complications from the time I was born and it seemed that no matter what the doctors did to help me, my condition continued to worsen. My poor parents had no idea what was wrong with their child. They became more and more frustrated as my health failed to improve. I had constant stomach aches with diarrhea and it seemed like I had a never-ending bronchial infection. I was a little coughing, shitting, and crying machine.
The endless episodes of parental torture from expelling bodily fluids in disgustingly graphic ways continued for over a year with little to no improvement. The doctors had diagnosed and treated me time and time again in search for the root of the endless cycle of poor health. Unfortunately to no avail, they always came up empty handed. One thing my parents always noticed was whenever they kissed me their lips would taste extremely salty from my skin. It struck them as odd but didn’t think much of it at the time. Read more